Baby Wyatt's Story

How to reduce your stress while in the NICU --- These ten simple ways.

2009-07-11T19:32:00.000-07:00

Your baby is sick. You're scared. There are machines everywhere and you don't know what is going on or what will happen. As a parent, this could possibly be one of the most stressful situations you will ever be in. How do you cope?

I found staying organized really helped reduce my stress so I could focus all my energy on Wyatt and family and not on distractions. Here are my top ten simple ways to reduce NICU stress:

Bring a book. You will need something to give you a mental break.
Pack a lunch, water and several snacks. Great for the budget and those long after hours.
Have about $5 in change always on you for parking, vending machines, pay phones, etc. ...
Wear very comfortable clothes. You'll be really thankful for this.
Have an extra set of comfortable clothes with you. You'll be REALLY thankful for them when someone poops on your lap or throws up all down the front of you!
Bring a cozy sweater or sweatshirt for yourself. NICUs can be rather cool.
Bring an outfit or item for baby that represents the "normal world" for you both. I saw other moms and dads have cute little outfit on a hangers by baby's bed. I had a mobile and a stuffed giraffe for Wyatt.
Have a pen and notebook with you. Information will be coming at you from everywhere and it will be overwhelming at times. Jotting down notes of what you are told helps you feel in control. Plus the journaling/recording aspect is comforting. It's an instant reminder of how far you've come when you need it at your fingertips.
Have a phone tree in place. It's very nice to know you can call one person with updates and that person will pass them on to the next family member/friend on your list. Sometimes it gets really hard to say the same news over and over again to everyone when all you want to do is be by baby's side.
Have a personal music player filled with whatever sounds that relax you the most.

Everyone has their own personal list and I really wish someone had given me some tips when I started going to the unit. Being uncomfortable or unprepared magnifies stress on an already full stress plate.

Hope this helps! What are/were some of your stress relievers?

It's 3:00AM... Why Am I Still Up?

2009-07-09T23:14:00.000-07:00

Have you ever experienced this? Wyatt decided to sleep howl again. Not sure why he is doing this, but it really is frustrating. No fair! I want to howl too, but I don't get to do the sleep part. UGH!

Once I got him calmed down, he wakes up and decides it is time to play. So here I am, sitting on the floor in the living room, surrounded by a sea of blocks, rolling a ball back and forth between us. He thinks I'm clapping 'coz he is doing such a fine job. HA! Mommy is clapping to keep herself awake. Silly silly boy. Crazy crazy mommy.

Wahhh, I want my bed!

Over tired. Wyatt is curled up in his cribby and I can't sleep. Ain't that just a peach. sigh

New FVA Video About Antidepressants and PPHN

2009-07-04T04:41:00.000-07:00

I found this very interesting. And frightening.

Soothie, Thumb Sucking And Pacifiers, Oh My!

2009-07-01T07:33:00.000-07:00

What's your take on pacifiers or soothers?

There is conflicting emotions and information surrounding a parent's use of these little baby items. Do they ruin the shape of a baby's mouth and mean you will have a HUGE orthodontics bill in the future? Do they make a child stay "baby-like" longer and hinder his/her development socially? Are they portals for germs? Do they inhibit breast feeding because they confuse baby? I'm sure you've heard many more...

Most babies learn to suck their thumbs in the womb. Some, like my little Lila and Wyatt, do not. And that is very frustrating. Why? I had a heck of a time getting them to latch onto both bottles and breast. Lila, of course, had an easier time of it compared to Wyatt, but it still was very hard training her to eat. As I've mentioned before, we had to finger feed her in the NICU for about a week. That is were a thin sterile tube attached to a sterile beaker filled with milk is slipped into the mouth of an infant as they suck on a shielded finger. Some use a full surgical glove and some wear only one finger cut from a non latex glove. Lila and Wyatt looked a little strange doing this; they were such big babies in the NICU next to all the preemies! Lila took off like a house on fire after she got the hang of eating with her mouth. As you know, Wyatt found it rough.

I had to coax Wyatt to suck on a soother. Dr. S and Dr. B needed to see that before giving the green light to feed by mouth. It could be very dangerous if he didn't know what to do with the fluid in his mouth. If it went into his lungs it could drown him, start an infection, etc. . The doctors didn't want me to get my hopes up. Wyatt's brain scan was very bad. He may not have the cognitive ability for that basic motor skill. He may just lay, sleep and eat through a nasal feeding tube for the rest of his life. But I really wanted to try.

The soothers the NICU uses are a medical grade silicone called a soothie. These soothers are tough and could be sterilized over and over again without breakdown. They only had the little tiny purple ones for the preemies; they don't usually get big babies in the NICU. Wyatt has a high palette, and these tiny soothers didn't really work for him. I didn't want to use a regular latex soother or the commercial silicone ones. They cannot be continuously sterilized and after the staph infection scare with Wyatt, NOTHING but medical grade silicone was going into my baby's mouth! I ordered a couple off eBay like the ones in the picture. They are AWESOME.

Now, at almost 13 months, Wyatt's molars are pushing up and he is miserable. At night he will wake up and only breast feeding will get him back to sleep. He doesn't have a soother because I'm afraid he will chomp a piece off and choke. He's got all his other teeth and they are razor sharp. He's bit the top off several bottle nipples already. I've tried teething blankets, soft and quiet teething toys but they don't work for nighttime. Nothing but Momma will do.

So, back to the soother question. I just found out soothie makes a tough teething soother for toddlers called a Super Soothie and I am tempted. The idea of getting a full night's sleep makes me want to run out and buy a box of them.

Free Fitted Crib Sheet Pattern - How To Make It Fit Your Crib Mattress

2009-06-30T21:10:00.000-07:00

The crib sheets I make fit the "standard" crib mattress here in Canada. But you could make the sheets custom fit for your mattress.

I just measured Wyatt's mattress and it is 27.5 x 52.5 inches. It is 5.5 inches in height. Remember, the height is KEY in getting the snug fit. My key in this case was 8.75 inches... here is the math:

8.75 - 5.5 = 3.25 the material UNDER THE MATTRESS. Gotta stay put somehow!

3.25 - 0.75(seam allowance) = 2.5 inches ... The actual fabric on the underside of mattress.

Here is how I figured out how much pre-washed and shrunk fabric I needed for the overall sizing:

27.5 + 8.75 + 8.75 = 45 inches

52.5 + 8.75 + 8.75 = 70 inches

So the formula for you is:

(mattress height)+(how much fabric you want under mattress so it stays put)+(your seam allowance)= Squares at corner you cut.

Then:

(Your mattress width on top)+ "the square" = the width of fabric AFTER IT WAS WASHED AND DRIED.

(Your mattress length on top)+"the square" = the length of fabric AFTER IT WAS WASHED AND DRIED.

And that's your crib sheet!

Happy sewing!

Momma Melissa

Breastfeeding

2009-06-22T18:51:00.000-07:00

Breastfeeding. It's a personal choice but is also about how easy you can get the hang of it.

Funny how some babies do it so naturally and some do not. My Tressa was definitely in the "do not" category. We literally wrestled with breastfeeding for about 3 months before she and I got the hang of it. And when we did, it was wonderful! Very convenient and comforting for us. We still had our ups and downs but we hung in for one year. Lila was born without knowing how to suck her thumb. We were in the NICU for about a week while we learned to first "finger feed" then suck on a bottle, then breastfeed. Lila, like Tressa, was ravenous all the time but we had very little problems breastfeeding when we came home expect for having to breastfeed all the time. We were able to hang in there for a year as well.

And Wyatt, my poor little guy, he did not get that chance to learn at the breast. As you know, he could not even be touched at the beginning. Paralyzed, the only way he could eat was by receiving total parenteral nutrition or TPN through a central intravenous catheter in his umbilical vein. The goal was to get him off it as fast as possible so not to harm his liver. But is liver became enlarged, his bilirubin went sky high and jaundice set in. Yuck.

Eventually, Wyatt was able to drink my breast milk through a feeding tube. That took some getting use to! I had to pump and store it in a fridge right in the NICU because Wyatt was on a constant feeding program as part of his treatment. And my little guy had a real problem with reflux. He was affectionately called the "Prince of Puke" and the "Regent of Regurgitation." Once he was awake and off the breathing tubes, I could hold him and hold the tube to control the flow of milk by raising and lowering the tube. If the milk went in too fast, Wyatt would spew. Fun times, let me tell you!

I wasn't comfortable with tube feeding. I was warned that there was a huge possibility Wyatt and I would be tube feeding at home. Dr. S. and Dr. B respected my desire to attempt train him to breastfeed in the NICU while they were trying to get everything else that was going on with him under control. His brain scan had come back really bad and they weren't even sure if Wyatt had the brain capacity to suck on a soother. Despite these grim warnings, I could feel it inside me that Wyatt could do it. So, Wyatt and I worked really hard at learning how to suck on a soother. This picture breaks my heart; look how tired and sick he is here.

Wyatt needed to grow. Nutrition was the key and there could be no error in his receiving it. Unfortunately, no one told Wyatt or he was simply not listening. Wyatt's favorite game was pull the feeding tube out of his nose while the feeding pump was on and spray milk all over his crib. He could do it within seconds and always when Mommy or the nurses were distracted for a moment. These tubes were meant to stay in for a few weeks and were expensive. At first, the tube was taped on with cute surgical tape hearts. Latter, the nurses still gave him hearts, but there was more strips than hearts stuck to his face. After he was up to pulling it out 2 to 3 times a day, they started to put the daily disposable ones in. They don't cost as much.

From soother, to finger feeding, to bottle and finally to breast, Wyatt learned to eat and was able to come home. He had some very strange quirks though. He could not eat for more than 5 minutes for the first several months home. In fact, most times it was 30 t0 40 seconds before he was exhausted and needed a break. You can imaging how long our feedings would last. He also did not exhibit signs of being hungry. (Dr. B. thought that might be due to his brain being damaged in that area that controls that function, but I can happily say Wyatt now howls when he wants his food!) And to top it off, Wyatt did not want to be touched when eating. Football hold, cross-cradle, cradle, lying down, and the tailor positions? Forget about it! Very quickly we learned a variation of lying down with only my nipple in contact with him. Me with whiplash, bad back, and nerve damage. You can imagine how fun that was! After we were in and out of the hospital with feeding and not gaining weight issues, we eventually got the hang of it once we added "dancer hand" into the mix. Thank goodness for the lactation nurses and consultants in the Mother Baby Clinic at the D.E.C.H.!

Now that Wyatt is a year old I feel like patting myself and him on the back. Breastfeeding a child with challenges is VERY hard but definitely worth it. Breast milk is best milk but I don't knock a mother's choice for using formula. I had to "top up" Wyatt with a higher calorie formula to help ensure he would grow. We parents need to do whatever we need to do for our little ones!

So the question now is for how long should we breast feed?

Amazing!

2009-06-12T13:26:00.000-07:00

I'm so chuffed up with pride! You know his physio therapy people are going to be thrilled. Wait till Dr. S., Dr. B, the NICU nurses, Nancy, Peggy and the rest of the gang see this. Go Team Wyatt!!! LOL

Wyatt Showing Off His New Truck

2009-06-12T11:37:00.000-07:00

Boys and their toys!

Wyatt Playing "Where's My Baby"

2009-06-12T08:00:00.000-07:00

Here is Wyatt playing a variation of "peek-a-boo" with me behind the curtain. My silly little monkey! He is doing great at walking around while holding onto furniture, windows and walls for stability. What do you think of his funky version of a crawl? We are trying to get him to put that knee down because it will help with his walking later. But as you can see, Wyatt is stubborn!

Oh, and please excuse the piles of kid toys and such in the background. Mommy was concentrating on having fun today. Funny how chores always wait for us?

Update on Wyatt's Bloodclot

2009-06-03T19:38:00.000-07:00

Let's celebrate!

At the last meeting, the IWK heart specialist basically told me that he and the clot team at the IWK feel Wyatt's clot is probably scar tissue. It is still there, and it is approximately 5mm x 5mm. Huge for such a little heart. But if it is scar tissue, it shouldn't break and move. Probably? Shouldn't? As the specialist said, he doesn't have a crystal ball. But these people know their stuff so I will take it for what it is. Good news! And about flipping time too. YAY!!

The electrical workings of his heart is still another matter, but the specialist said the test he conducted was favorable. Len and I both need to have our hearts tested to see if it is more of a genetic thing. So basically, Wyatt is still on the list for the IWK heart clinics but he is not a serious case. Very blessed news!

Sorry for not posting sooner, by the way. I'm having serious issues with carpal tunnel syndrome and radiate pain. Unable to type for a long while. But Wyatt and I thank you, thank you, thank you for all the kind words and prayers.

Another Look At Baby Wyatt's Heart Blood Clot

2009-04-07T10:11:00.000-07:00

I am so very nervous; tomorrow the IWK cardiologist is seeing Wyatt about the blood clot in his heart. My hopes? That it is gone! But I would settle for significantly smaller and looks like it is disappearing. Keep your fingers crossed and your prayers coming for my little man!

And look at what Wyatt can do now!

Crushing News in Oct. 2008 ... Blood Clot In Baby Wyatt's Heart Not Gone

2009-03-04T07:54:00.000-08:00

You go to the appointment, hoping, praying that the specialist will say what you what him to say. You've given the needles, you went to all the appointments and stroked your baby's soft sweet smelling hair as he howled with discomfort while being poked, prodded and analyzed. You've agonized over each breastfeeding session, pushing his limits, praying he'll take more so he will grow, therefore making the clot smaller in relation to his heart. And you've prayed that his little body that's been through so much will have absorbed the clot and it is gone. So how do you feel when the specialist looks across the table at you with all the print outs, graphs and numbers in front of him, telling you that it is not gone. That it never changed in size. That there is an indication that the electricity of his heart is abnormal. And if left as is, he will die.

How do you feel?
Crushed.

I so wanted to hear this past, present and looming nightmare was gone. My hopes were high that October morning when Wyatt and I went up to the pediatric ward at the Dr. Everett Chalmers Hospital. We've been waiting for this day since we were discharged from the NICU. The chance to meet with the heart specialist from the IWK Hospital Halifax, Nova Scotia. We went through the usual weight and measurement checks. One week prior, Wyatt had an electrocardiogram (ECG, EKC) done. He had another done while waiting for the specialist.

The specialist had his own technician come Fredericton so that he could be sure the echo cardiogram or ECHO was done the way he normally has it done. Wyatt had had this test done in the NICU and he really does not enjoy it. This time I had a bottle of milk ready to use as a diversion tactic. The technician was a really nice lady who chatted with us, cooing over how big and handsome Wyatt was. Wyatt, being his usual self, flirted something fierce with her! LOL.

I distracted Wyatt with his bottle while she started placing the wires on him, trying to act as calm as I could for Wyatt's sake, but inside I was so nervous and excited. I was sure the clot was gone! It had to be. All those blood thinner needles I gave him had to have worked.

Finally, the sort of fuzzy image of Wyatt's heart appears on the monitor next to Wyatt's bed. And the first thing the cardiac technician says? "Wow, that's the biggest clot I've ever seen."

Stunned, I watched her map the image, taking the measurements and entering data. The specialist comes in and he points out the shape of the clot in Wyatt's heart and down his aorta. It was horrific and fascinating at the same time; I had never actually seen the clot before.

The specialist took the data and advised me he needs to review it first. I'm told to wait in a separate room with Wyatt. At this point, I was trying to keep it together because I know the doctor will not tell me everything if I am falling apart. I've been down that road before. So I wait.

He came in and spread all the print outs on the table. Wyatt's clot is massive. He actually did not have the measurements from the previous NICU echo but it didn't matter. I am told a "clot team" in IWK will have a conference on Wyatt to see how to proceed and that I should be able to stop the Lovenox injections. This shocked me and scared me. What if the clot gets bigger? When I asked this, I was told to continue the injections until Dr. S. hears from the clot team.

And then the specialist pulled out the stripe showing the peaks and valleys of Wyatt's EKG. There was a problem. The test matched with the prior one, showing a pattern that indicated Wyatt may have arrhythmia. This was completely new to me. What could this do to my son? He made reference to young adults and children that have heart failure while playing sports. He tells me so much information but at this point I was so overwhelmed that it is washing over me. I'm nodding my head as he talks, trying to look calm but all I want to do is grab my sleeping son out of his car seat and hug him tight to my chest.

At the end of the meeting, I had to ask. "Can this arrhythmia problem kill my son?" The specialist hesitated before answering me. Yes, if left untreated. I thank him for his time and leave, crying my eyes out as I drive home.

Something To Smile About

2009-02-24T07:09:00.000-08:00

Wyatt looking fine at 8 months old!

My little man has definitely come a long way. He is active, mischievous, and of course CUTE!

God bless all those who helped us get here and for all the prayers. Again, thank you so much Don and Chris Wilson of Wilson Builders LTD. for your continued kindness towards my little boy and family. These men are are truly wonderful! Thank you :)

A Giant Thank You To An Amazing Woman and Friend

2009-01-13T16:09:00.000-08:00

I wrote this post over and over in my head for the past few days and I still can't get the words right because it means so much to me. So, I'll just say it straight from the heart.

Donna, thank you. Thank you so much for your gift, for your prayers, and for being in touch when so many were not. Thank you for your wonderful books that helped me to laugh and think of something else for a few precious moments when I desperately needed a break for sanity's sake. Thank you for being a friend. :)

Let me introduce you all to this amazing woman. Donna Alward, born Donna Jones, is a romance writer for Harlequin books. You can visit her at http://www.donnaalward.com and meet her on her blog at http://www.donnaalward.blogspot.com . I grew up with Donna and I can say I've always admired her. (Yes, Donna, it is true!) She was the girl in grade 9 that had the guts to go blond, able to play music and to declare she would one day be a romance writer. I remember her as one of the smart kids with a keen sense of humor, sharp wit, kind heart and being passionate about everything she did. A kind of kid a parent would be proud to have! LOL

Donna writes with all of these qualities and more. Her books can and will make you laugh, cry and fall in love all over again. So for all you moms and dads (yes, dads too!) that need a break, I'd definitely say look for Donna's books. Lord knows how nutty the NICU, Peds ward, and doctor offices can make us. You can find a list of her work with excerpts here. My favorite? Hmmm. They are all fantastic, but Hired By The Cowboy has a soft spot in my heart. :)

Thank you so much Donna!

Free Feeding Diary to print or download

2009-01-11T15:32:00.000-08:00

Feeding times and amounts. Soiled diapers and how much. Medications given, how much and when.

Yikes! Almost all moms suffer from "Mommy Brain" at some point. These important facts can fly right out the window when we need them the most. So, here is a journal I made to help me remember, when asked by the many medical professionals.

Another big plus: Helps to give you piece of mind when you are sleep deprived! :)

It is a pdf file you can save and print. I cut mine to size of a coiled notebook and glued it in on each right hand page. That way I could write notes about how Wyatt was doing that day on the lined backside. The nurses and doctors really loved it because it gave them very clear information to work with.

Enjoy!

Breastfeeding/Formula Feeding/Diaper/Medication Journal

Update

2009-01-10T10:20:00.000-08:00

Merry Christmas and a Happy New Year!

Hope you had very happy holidays! It was a whirlwind for my little family. Stressful, but every mom and dad experiences that! LOL

Lots has happened with Wyatt, some good, some disappointing, but over all, I feel very blessed. I'll give you a quick update:

Wyatt was in and out of the hospital twice for colds. Normally, an infant with a cold is a concern but something we parents take in stride. You can't give much to a baby to relieve the symptoms. Good old fashioned rest, fluids and a watchful eye is about all you can do. But when a baby is on oxygen for a time period, their lungs are very fragile and a cold could be the worst thing for them. So Wyatt and I got to hang out at the hospital for a few days. He loved the attention from the nurses and Dr. S.

Wyatt was denied the special needle that really sick babies get during the winter months to boost their respiratory systems. It is frightfully expensive; approx. $1000.00 CND per shot. It is a controlled drug by the government; only few babies can have it and they must meet a criteria. Under a certain weight, had oxygen therapy for a period of time and under 6mths. Dr. B, who was one of the doctors I witnessed save Wyatt's life on a few occasions, was pushing to get Wyatt on the list but he was denied. Too big, too heavy and already 5 months old. RATS. But Dr. S said he feels Wyatt will be fine without it. I just am super cautious of taking him around people with colds.

And to all the parents that contacted me, yes Wyatt is meeting some of his milestones but he is not meeting others. I've got a special post coming with more details. Wyatt and I go to a NICU Follow Up Rehab. Center to work on his physical, mental, and emotional development. A team is following him until he is three. We also have a nurse from Early Intervention visit us at home to show Wyatt and I some play therapy exercises we can do to encourage Wyatt in meeting his milestones. Wyatt LOVES theses "play dates." A nurse from New Brunswick Public Health checks in with us from time to time to see if Wyatt is growing and eating properly.

Speaking of that, he has not been eating and growing very well. It is really stressful. Wyatt was breastfeeding for maybe 30 seconds at a time. Dehydration was and still is a constant problem. He is now up to a 5-10 minute feed at a time, but it is a lot of hard work that gets us there. Sometimes he will eat for more than 20 minutes! That is rare, but when it happens, it is like gold! I still have to top him up with an extra feed of a high calorie bottle (8 oz.) once a day.

At last weigh in, Wyatt was almost 21 pounds and gained in length for his 6 month birthday.
YAY!!! GO TEAM WYATT!!!!! :)

CBC RADIO interveiw on Nov. 12, 2008

2008-11-13T07:32:00.000-08:00

This was really unexpected! I came home from a doctor's appointment and my husband said Paul Castle who hosts "Shift" on CBC Radio wanted to do a telephone interview with me about Wyatt. CBC said I could share it with you on my blog. A big thanks to CBC!

Note: this audio is approx. 12 minutes long. There is a 10 second pause at the start before it starts.

Intubated, Ventilated, and Drug Induced Paralysis

2008-11-12T19:45:00.001-08:00

This picture is hard to look at.
To save Wyatt, he had to be intubated. A tube was inserted into his mouth and down past his larynx so he could be ventilated. A machine now controlled his breathing. Precious oxygen and nitrate were forced into his lungs at a controlled rate. My poor little guy.

These machines were frightening. Constant graphs, charts, ominous beeping, warning tones and numbers that fluctuated on monitors, making you grip the armrests on your chair as numbers rose and fell. Once, in the early days, while I was silently bawling my eyes out next to Wyatt as I watched helplessly as the number representing his oxygen levels dropped, a NICU nurse told me to stop fixating on the machines. Concentrate on your little guy and let them worry about the numbers. At the time I thought she was crazy. How could a parent not worry? But she was right. I had to see Wyatt. Not the tubes, pipes and wires. It took a long time for both my husband and I to learn this.

Wyatt had to be paralyzed by drugs to keep him from ripping tubes, wires and pipes from his body. A NICU nurse had mentioned to me he was a fighter though extremely weak; he was attempting to pull the tapes and wires off as fast as Dr. S was putting them on during those first few crucial hours. He needed to be paralyzed but I think that was what really scared me the most. He didn't look real. No moment. No sound. Like a really large baby doll. It frightened me to sit beside him at first. I wanted to touch him, to pick him up and squeeze him to my chest to feel his little heart beat to reassure myself that he wasn't dead. But I couldn't touch him, or hold him or even talk to him. I was torn; I wanted to run away and hide in my hospital room and I wanted to stay. If he was going to die, I wanted to be there to hold him in my arms at least once and kiss him and tell him I loved him before he left me. I didn't want to be robbed of that.

So, I stayed by his side for hours, barely eating and definitely not sleeping. Already suffering from post traumatic stress and anxiety from the accident, I was primed for postpartum depression.

Many Thanks From Wyatt and Family

2008-11-12T05:11:00.000-08:00

Prayers. Support. Kindness. Compassion.

To have members of your community extend these precious gifts to you unexpectedly, well, it is truly amazing. As a parent of a sick child you are so full of worry, so full of anxiety that you can loose touch with your community. Drugs, hospitals, doctors, specialist and health professionals become your world. It's a lonely, frightening place. But to have a helping hand to come out of the blue in these trying times, it's like a ray of light bursting through a dark sky. Uplifting and fills you with hope.

Thank you so much Don and Chris Wilson of Wilson Builders LTD. for your kindness towards my little boy and family.

And to Father John Jennings and Father Monte Peters and all the members of St. Theresa's Parish and St. Anthony's Roman Catholic Church Parish, thank you. Up at the NICU, they were calling Wyatt the "miracle baby" and I know it was the power of prayer that guided the doctors and nurses hands. Thank you, thank you for your prayers!!

Melissa

A Grieving Grandmother's Persepective...

2008-11-10T19:22:00.000-08:00

You can not even guess how honoured and blessed I am to have a mother-in-law like Germaine. This special woman raised a wonderful man who I am lucky to have as a husband. She gave me the gift of a helping hand when my world was sent spinning out of control over and over again in 2008. I owe her and her kind husband Kris so much.

Germaine wrote this blog entry for all of you. I must confess, I found it hard to read because it is still so very raw for me. But it is truly something must be shared with all the grandparents of little ones who are sick. You are not alone in the fear, the sadness and the grieving.

*** * ***

"Hi Everyone,

Wyatt is my beautiful grandson and brother to his two beautiful sisters Lila and Tressa. His parents name are Melissa and Leonard. This is their story.

Melissa was driving home at 7 pm at night. She had our granddaughters in the backseat and was on a twinned highway. A drunk driver, who shall remained unnamed, came along on this twinned highway on the wrong side and collided with Melissa’s Ford Windstar. She was seven months pregnant at the time. I will not put a name to this drunk driver because I want to tell you Wyatt’s story.

The drunk driver’s Saturn(sedan) collided head on with my precious family and took all semblance of a normal life from them. He then proceeded to run from the scene. Fortunately he was apprehended at his grandmother's house. Melissa suffered a severe concussion and whiplash. My two girls suffered minor cuts and bruises. We will never know what impact the memory of this accident will have on them. Melissa was the one who suffered.

When they arrived at the hospital Melissa was told that her pregnancy was in jeopardy. She was 7 months pregnant and it was a complicated pregnancy due to gestational diabetes. If Wyatt survived the next 48-72 hours he would probably be o.k. Mom of course was in a panic. The concussion only added to the panic she was feeling because she had lost some of her memory. Wyatt did survive beyond the 48 hours and Melissa carried him to term.

On June 15th Wyatt came into this world. He was not breathing and he had heart issues and was rushed to the neonatal unit where they proceeded to try to revive him. He was a fighter and they managed to bring him back but they did not hold much hope. They did not know how long he had been without oxygen. They gave him 24 hours and then they would see. My husband Kris and I were at the hospital at the time with our two granddaughters, Tressa and Lila. We had to take them home with us because Mom and Dad had to stay around the clock to watch and pray over Wyatt. What started out being a routine Cesarean section became a nightmare in a matter of seconds. No one knows how a second can change your whole life. For my son and his wife their world as they knew it ended. Their life became endless hours at the hospital watching to make sure that Wyatt had a parent there at all times. My son’s job ended that day as well because his wife needed his support.

Wyatt has had numerous battles. He had septimia which is an infection you get while in hospital due to all the tubing he had hooked up. He was in serious danger of losing his life again as he did not respond to the antibiotics. They had to send away for special antibiotics to see if they could bring his infection under control. While he was fighting for his life other conditions developed which again threatened to take him. His belirubim count was so high that they did not know if he would be brain damaged from the jaundice. If they could not bring that under control his prognosis would be grim. He could be permanently brain damaged. In the meantime he developed a blood clot in the anterior valve of his heart. I am not a doctor so I am telling you this to the best of my knowledge. If the clot was to break off it would travel to his lung it could cause death or serious breathing problems which in turn may cause him to die. His condition is called Acute Pulmonary Hypertension. Wyatt veins did not constrict or open up at birth which caused him to have many problems. Wyatt is four months old now and still fighting, He is a beautiful boy and he continues to surprise us every day by doing things they did not think he would ever do.
I can honestly say that we have been grieving for months now. You see initially we did not have time to think about it as we took our granddaughters home with us. They did not go home for months as both sets of grandparents took over their care. To this day I don’t know how or why we could do what we did. We had never had our granddaughters for any amount of time on our own. We did not have time to think or feel the drama unfolding at the hospital. Wyatt was baptized that night. He almost lost the battle ….he was paralyzed for the first month and a half of his life. He was intubated, tube fed , poked and prodded in every way and watched around the clock. A literal time bomb….tic tic tic…will he make it.

For his grandfather and I it has been a very strange experience because as I said we did not grieve immediately. We are grieving now. We are grieving the loss of time of the first few months of our grandson’s life.

Look into those beautiful blue eyes and I know you will see what I see… an angel on earth. We love him so much and we love their parents who are doing such an excellent job of keeping their family together.

Thank you for your support,

Wyatt’s paternal grandparents "

*** * ***

Thank you Germaine, I love you so much...

The Diaper Dilemma

2008-11-10T03:05:00.000-08:00

What's incredibly stinky, super tall, and very high maintenance? Wyatt's diaper pail!

Have you ever heard of a newborn wearing size 3 diapers? Poor Wyatt! Size 1 looked like a bad advertisement for men's bikini brief underwear. The nurses were using the newborn size on his foot to help heat it up for the tons of times he needed to give blood.

And now, at almost 5 months, he is wearing size 4-5. Diapers only go up to a size 6 for babies! Plus, as all you moms and dads know, there is fewer in a pack as the sizes get bigger and the price gets higher. Yikes! Will Wyatt need "Depends" when he is 1 1/2 years old?????

Well, I'm not sure what Wyatt and I are going to do...

Free Fitted Crib Sheet Pattern

2008-11-07T19:26:00.000-08:00

Well, I posted my first ebay auction to benefit our little family. It's for a fitted crib sheet. They are sturdy... I still use the ones I made 5 years ago for my first child. Good thing they are blue, eh Wyatt? :)

If you want a fitted crib sheet that fits, looks beautiful, and is easier to put on than the department store crib sheets, please consider clicking on this eBay link. They make great gifts too! I put as much care and attention in their creation as I do when I make them for Wyatt.

If you sew, here is the pattern I use. It is a combination of several patterns I've found on the web. I love making them and they are so easy to do!

Materials: 2 yards of cotton or cotton blend woven fabric. I like to use flannelet; it's so soft on a little baby's skin. One spool of good quality polyester thread in co-ordinating color. 2 yards of 1/4 inch elastic. A cutting mat, large quilting square ruler and 90 degree angle ruler are nice to have.
Directions:

Wash fabric and dry in dryer to pre-shrink it.
Fold right sides together so the length is 2 yards by 22 1/2 inches approx. Iron or smooth with hands.
Cut one end of the fabric to create a straight edge. Measure 70 inches along the folded edge, mark with a pencil and cut a straight edge. You now have a rectangle 70" x 45" approx.
To form the mattress pockets, cut a 8 3/4 inch square from both the top left and right corners of the folded fabric. You will have 4 surplus pieces of fabric. CAUTION: Don't cut these on the folded edge!!!!
With right sides together, match up the cut edge of each square cut from the fabric and sew with a straight stitch with a 3/4 inch seam allowance. This forms the mattress pocket. I then do a zigzag stitch along this edge to over lock the material, keeping it from fraying. Do this to all four corners of the sheet.
Turn up the edge 1/4 inch all around the sheet and sew. I usually do a zigzag stitch here.
Turn the sheet so the wrong side is facing you. On the shorter side of this rectangle, stay stitch the end of one elastic approx. 10 inches from the corner seam and about 1/4 inch from the edge. Stretch the elastic taunt and zigzag stitch it to fabric, making sure the needle catches the elastic. Sew all along the long side of the rectangle, around the corner and stop about 10 inches from that corner's seam. Stay stitch the end of the elastic and snip. Repeat this step along the other side of the sheet.
Trim all long threads.

That's it! Try it on your crib and admire your handy work. I don't sew the elastic all the way around because I like to have some way to tell which edge is the long side and which is the short side. Plus they fold neater this way.

Have fun! :)

Hurray!!!! No More LOVENOX injections!

2008-11-06T10:08:00.000-08:00

We just got word today from Dr.S. who spoke to the cardiologist from I.W.K. to quit the Lovenox. You cannot guess at how happy I am to stop these injections!!! Poor Wyatt, he is looking like a very sore little pin cushion right now.

But it is also very terrifying. The blood clot in Wyatt's heart is still there and it is massive. The Lovenox was to keep the clot from getting bigger. The theory was that as Wyatt grows, the clot would get smaller in relation to his body and eventually be reabsorbed by the body. Now our family is wondering what will happen next without the Lovenox. We are meeting Dr. S. in a couple of days for a consultation to see what the next step will be.

You might be wondering what Lovenox is. It is a low molecular weight heparin, a costly drug that thins the blood. To quote Wikipedia, it is:

"Enoxaparin is a low molecular weight heparin manufactured by Sanofi-Aventis. It is marketed as Lovenox or Clexane. Enoxaparin injections are derived from the intestinal mucosa of pigs. Enoxaparin is used to prevent and treat deep vein thrombosis or pulmonary embolism, and is given as a subcutaneous injection (by a health care provider or the patient). Its use is evolving in acute coronary syndromes (ACS)."

Basically, I'd have to pinch a fatty part of either Wyatt's arms or legs, insert the needle at an angle and press the plunger all the while my little guy is howling and writhing in pain. Not fun. We were told wayyyy back in August 2008 (notice the almost full sharps container) that Wyatt should become accustomed to them and would barely flinch. HA!!! Also notice how strong of a grip my husband has on Wyatt. Needless to say, Wyatt does not like needles. Neither does Mom and Dad.

The worst part about giving the injection as a parent is the fact that you are hurting your baby, even though you know you are helping them. Moms and Dads who must give needles too, you folks are very brave people. I'm new to this, and I can't tell you how many times I dropped the wretched thing or stabbed myself with it. Of course, the needle must be absolutely sterile, so into the sharps container it would go!

This definitely isn't an experience you'd soon forget, though you'd like to. Here are my top two needle moments I'd like to forget:

Lovenox crystallizing in the shaft of the needle, so when you inserted it, you could not get the plunger to press down to give the needle. Wyatt absolutely needed this medicine, so I'd have to stab the poor little guy again with a fresh needle and hope this one would work.

Having a panic attack just as I was pushing the plunger of a second needle. The first one malfunctioned like how I mentioned above. My husband put that still full needle in the sharps box. Half way through administering the dose of the second needle, I couldn't remember if I gave Wyatt part of the dose from the first needle. I yanked it out and tore open the sharps box, frantically digging through the old needles to find the loaded needle while my husband looked on with horror. Crazy? Maybe, but I seriously thought I gave Wyatt too much of the blood thinner. THAT would be very bad. Ah, panic attacks. I'm new to them too. Don't you just love them? sigh

My poor little sweet pea.

2008-11-05T19:22:00.000-08:00

Thanks so much, Mia! And a huge thank you to all the people who have contacted me about Wyatt. Your thoughts, prayers and support mean a great deal to me and my little family.

And to the families that have contacted me about pphn... bless you. You are in my prayers. :)

Melissa

How a devastating story begins.....

2008-11-05T14:16:00.000-08:00

June 16.
It was early in the morning and I had just got back from a camping trip the night before when my cell phone rang. Hearing my mother's shaky voice, I knew something was terribly wrong. She struggled out a sentence that took me by surprise. "Melissa had her baby last night,and it doesn't look good." After mom told me a quick version of what happened, I hurried up to the hospital to see my sister and beautiful baby Wyatt.

I entered her room and there sat my sister on her hospital bed, tears running down her cheeks, holding tight a rosier Mom gave her. I ran over and gave her a huge hug. When she had finished telling me what had happened we went to see baby Wyatt. Once we were in the neo- natal unit and finish scrubbing our hands really well, (3 minutes!) we went over to where he was laying in a incubator. A breathing tube was in him, connected to monitors reading numbers that went up one minute then down the next. He was laying so still with his eyes shut tight. No one was allowed to even touch him; it could disturb him and that was extremely dangerous. It was just horrible seeing him like that. I had to fight back my tears so i wouldn't upset my sister. It was such a awful feeling of helplessness, as if there was nothing anyone could do except wait. It was in Gods hands.

So, I prayed. And prayed and prayed. I even heard from a friend that our priest asked the people attending church to pray for baby Wyatt. And let me tell you, I do believe in the power of Prayer. After a bit, he started to slowly improve dispite the odds against him.

November the fifth.
It's so warm outside. Just heard baby Wyatt start to cry. I walked down to his room and pick him up from his crib and hold him tight in my arms. As he looks at me with his bright blue eyes, he stops crying and makes a smile. "I love you baby Wyatt," I say to him as I lean forward and kiss his forehead. Surprisingly, he grabs very hard onto pieces of my dangling hair! I laughed...and yes it hurt. lol.

Looking back at the moment he was in the hospital, it feels like it was a terrible nightmare. I am very glad that part is over. My beautiful little nephew still has a very long, hard way to go yet, but looking into his gentle blue eyes I feel inside me that he is going to be alright. One thing I can say to others, "if a situation where a love one is ill and it doesn't look good...Pray. Pray and don't ever give up believing".

5 AM and raining...

2008-10-29T01:00:00.000-07:00

Ugh, it's 5am, raining very hard and I ache more than usual. Had physio therapy yesterday and it was painful and depressing. Piano-wire tendons. Not good. Now I know why my hands spontaneously drop things. Rats! Makes drawing and painting almost impossible, but I refuse to give up.

When life gives you lemons, make lemonade. Lemon bread. Lemon pie. Lemon cake, etc.

Did I mention I'm sick of lemons?

What is Persistent Fetal Circulation?

2008-10-28T03:25:00.000-07:00

You may be asking, what is this condition? I did. Here is a good explanation by a member of Children's Hospital and Health System, the Children's Hospital of Wisconsin from their "Disorders, Diseases and Organ Topics" -Persistent Pulmonary Hypertension page. The quotes are from this website.

"Persistent pulmonary hypertension (PPHN) is also known as persistent fetal
circulation. In this condition, a newborn baby's circulation changes back
to the circulation of a fetus, where much of the blood flow bypasses the lungs."

Later, Dr. S. and Dr. B., both amazing pediatricians, said Wyatt came out "floppy" with no muscle tension like "normal" babies do. Something had happened that deprived Wyatt of oxygen.

So why is PPHN such a concern?

"When blood is shunted away from the baby's lungs, it is difficult for the lungs
to do the work of exchanging oxygen and carbon dioxide. Even breathing air with
100 percent oxygen, babies with PPHN have low blood oxygen levels. This can be
serious, as all of the body's organs are dependent on oxygen-rich blood being
pumped to them and may become damaged from lack of oxygen."

This was what the doctors feared. Brain damage. Lung damage. Heart damage. And the list went on. Your head spins with the tidal wave of horrific possibilities.

What symptoms did they see to diagnos Wyatt with PPHN?

"Baby appears ill at delivery or in the first hours after birth. Cyanosis (blue
coloring). Rapid breathing. Rapid heart rate. Low blood oxygen levels while
receiving 100 percent oxygen. "

He had them all. Plus the doctors noticed Wyatt had an abnormally large heart that was floppy. So what did the doctors do to try to stabalize him?

Supplemental oxygen (giving 100 percent oxygen by a mask or plastic hood).
Placing an endotracheal tube into the baby's windpipe (ET tube). Mechanical
breathing machine (to do the work of breathing for the baby). Medications (to
completely relax the baby's muscles and reflexes so that he or she will better
respond to the mechanical ventilator). Inhalation of nitric oxide (to help
dilate the blood vessels in the lungs).
Treatment of PPHN is aimed at increasing the oxygen to the rest of the body
systems. Long-term health problems may be related to damage from lowered oxygen in the body.

Frightening. Absolutely frightening. What do you do as a parent? Pray and wait.

Persistent Fetal Circulation or Persistent Pulmonary Hypertension (PPHN), A Truly Frightening Thing

2008-10-27T11:44:00.001-07:00

Here is the first picture of my baby Wyatt! Even though he is as cute as a button, I confess I still find this picture hard to look at. He was so desperately ill at the time.

I knew something was wrong moments after Wyatt was born. Almost everyone in the operating theater were laughing and commenting on how big he was. My OBGYN joked that she wished she wore her rain boots during the C-section because there was so much water. The anaesthesiologist was talking to my husband, Leonard, saying this was the biggest baby he'd ever seen born in his over 30 year career. I was only partially listening because I was trying to hear what I desperately wanted to hear for the last 39 weeks. But there was only silence.

I kept asking "What's wrong with my baby? Is he alright?" One nurse came over to me and said he was having a little trouble but not to worry. That spiked my fear, but then I heard a weak grunt and someone said, "That's your baby boy talking to you, Mom!" He made a sound so he must be fine, right? What a relief! He was darted out of the room so fast, I only got a glimpse of him. I stayed in surgery for about another hour due to a damaged ovary, but it could not be saved.

While in the recovery room, my husband, Father and Mother chatted with me. My two little girls, 5 year old Tressa and my 2 year old Lila came in as my parents stepped out. We were all so excited. Leonard, my mum and dad all stepped out to see Wyatt. Leonard's parents came in and took the girls out. Leonard came in again with my parents and said something to me. Shocked, I looked into my mother's and father's tear-filled eyes as mum pressed her Rosary into my hand. "Don't let go of this, keep it with you at all times and pray for our new little baby. This is really serious." My memory is not always the best due to my head injury from the accident I had on March 4, 2008, but I remember crying my heart out. My OBGYN, Dr. M., was crying when she came in to see me.

Much later, when I was in my room, Dr. S., one of the pediatricians came in to see me about Wyatt. He grimly told me that Wyatt had "acute persistent fetal circulation." Wyatt's little body basically still thought it was in the womb and oxygen was not circulating through his body. It was extremely serious, so serious that Wyatt could not be air lifted to Toronto Sick Kids Hospital or to the IWK for sick kids in Halifax. He would die in transit.

We waited, and waited to see him, but they were still trying to stabilize him. Around midnight, my brothers Ken and Kris arrived after a 2 hour drive, collecting Priests and Padres along the way. Ken had arranged Wyatt's baptism and we held it in the NICU. I could not thank my brothers enough.

Wyatt was so sick, I couldn't hold him, touch him or even speak to him. No loud noises were allowed around him. He had to be in a "womb" like state with no stimulus and I remember holding my breath every time a nurse would touch him because his stats would "crash." This is a picture of me touching Wyatt at his baptism. It was only for a moment and I treasured it for the days that followed.

Why I am blogging about Wyatt and his condition...

2008-10-27T11:05:00.000-07:00

You might be a parent or a loved one to a baby born with acute persistent fetal circulation (or persistent pulminary circulation) or who have developed blood clots in their hearts from central lines. After Wyatt was born and when I was finally strong enough, I went on the web hoping to find a story of a baby with the same condition as Wyatt who beat the odds. As a parent with a sick child, you want something to give you hope, to give you a parents perspective of these terrifying things the doctors and specialists are saying. Unfortunately, there wasn't much that I could find. I vowed to create something.

This will be physically, mentally, and emotionally hard for me but it must be done. I don't know the outcome of this story yet, and I pray to God there is a happy ending to this chapter in our lives coming our way. And this I definately know: despite all this trama, financial hardship, and stress, I would go through it all over again for my precious Wyatt. Mommy, Daddy, and your two sisters Tressa and Lila love you so much, baby boy!